About Jen

Whom I was, Who I am, and whom I long to be.

Turning lemons in to lemonade, and pain in to purpose.

Fran Drescher "The Nanny"

Hello my name is Jen McCulley, and am a warrior and a survivor.

I was 14 years old when bruising kept appearing all over my body and sometimes I would find myself bleeding uncontrollably from my nose; thats when my parents decided It was time to see a specialist.

After a long journey of exams and tests including a bone marrow Biopsy and lumbar punctures then after several days of being hospitalized, it was official. I had stage 1 of Chronic Myeloid Leukemia.

For those unfamiliar with this disease, it is a cancer of your white blood cells, characterized by the irregular growth of myeloid cells in your bone marrow and the accumulation of those cells all over my body.

An estimated 43,000 patients are diagnosed with leukemia in the United States alone each year, and 22,000 patients will die of their disease. The disease may occur at any age including birth. The lifetime risk of developing leukemia is 1 in 78 people.

My parents were told I wouldn't see my 20th birthday. Today I am 31 years old and have an ongoing battle with leukemia and other diseases but I'm still here kicking and screaming.

Although I battle leukemia I have another auto immune disease more common know as Lupus which affects an estimated 500,000 people a year.

I was uneducated about Lupus until after I gave birth to my second son who was a miracle considering he was born early.

For those that are unfamiliar with Lupus, it is an Auto Immune disease that creates proteins and antibodies that instead of protecting your body from minor infections or colds per se those antibodies and proteins attack all major and vital organs sometimes leading to death.
Due to sun exposure which cause rashes in your body, and a malar rash mostly known as the Butterfly rash, and the lifespan once diagnosed, its of 5 years.
But things were only just beginning for me. During delivery, I had bleeding complications which delayed the delivery of the placenta. I was bleeding to death. that delay created a blood clot that extended from my right cervical arteries up to my lung which by the way was filled with fluids and the clot was traveling to my heart.

Now I know that all the complications I went through with my pregnancy were triggered by dormant Lupus.
I was unaware I had it. My baby is one of 3 babies I was expecting but 2 died in utero, complications generated by Lupus.
I had what today is known as the Twin Vanishing Syndrome, making my son the only survivor, and that makes him a miracle.

After delivery I kept complaining about chest pain. The doctors at Evans Army Community Hospital would say it was only Postpartum Depression causing physical pain. 5 days later I was dying with Cardiomyopathy and severe heart failure plus a failing heart valve, and more that I can't even remember at this point (call it Lupus fog or blonde moment) and the doctors at Evans finally decided to send me to Memorial because they had no resources to keep me alive.
When I was Transferred to Memorial and more testing was done, the heart problems were confirmed and then Lupus came in to the picture and the doctors explained that all the complications I had during pregnancy and labor were all due to Lupus. Lupus had gotten in to my vital Organs, specially my heart and I was dying.

Even though All of the doctors said that I had 1 week left to live I have continued to fight for 17 months since that diagnose. It has been hard but I am still putting up a good fight. It may knock me down on my knees sometimes but I always get back up and each time, I'm stronger than I was the time before.

Because I had to re-start chemotherapy to treat the Lupus, it got me out of my leukemia remission. In fact, I was at the salon Paul Mitchell School, getting my hair done when I got the news, and I got scared, But As a mother I knew I had to keep it together for my babies, for my husband, and for all of the people that is behind me giving me strength and courage to beat this, that day that I was told that my leukemia was back worse than its ever been.
The wonderful students that were there working on my hair, were my support system. They got me through what was one hard day and I left with a smile on my face.
Even the stranger beside you can be your brother or your sister in time of need but you never know when it'll happen till it happens.

I will be having Bone Marrow transplant soon and once the transplant is done I will continue kicking. It takes a lot to beat me down, and I have a whole lot to live for and so I fight and I will continue to do so till my last heart beat.

I had a life before Lupus.
And as every woman I had dreams to become a mother, get pregnant, carry and give birth once more and maybe have the baby girl I always dreamed of having, but now because Lupus invaded my heart and other vital organs, I will never have a child again. But I have 2 beautiful sons and for them is whom I fight for today.

It is definitely not easy having cancer in my blood and SLE LUPUS at the same time and getting chemo for them all is hard, but I have so much and so many to fight for, and yes there's days when I feel like quitting but that is not an option.

Every morning when i wake up that is if the pain let me sleep the night before, I have 1 of 2 choices to make.

1, Dwell on the past, on all that is lost, all that was taken from me and cry and be ungrateful for living another day with this miserable disease or

2, open my eyes, give thanks to the Lord for giving me one more day to see my husband and our babies grow up and for giving me a fighting chance so that my children have a mother that is fighting to see them one day graduate from school, maybe college, maybe get married, perhaps, just maybe, become parents.
But for now am taking it one day at a time and day by day.

I want to be there and Only God knows when he wants me up there.

Everything GOD has allowed to happen till this day, is for a reason.

That reason is to make a more stronger woman in me, to be a walking testimony of his grace. his mercy, his never ending love and his faithful promise that everything will be okay!

He calls us in the bible to be strong. Am not the best Christian but I trust him and I believe in his promises.

Joshua 1:9 reads: Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go.”

For those who are going through this, just keep fighting, and if you happen to know someone who is going through something similar, sometimes a hug its all this person needs. sometimes we don't now how to be strong until be strong is the only option we have left.

Like Fran Drescher said, "If you catch it in arrival, 95% survival"
John Mayer says in one of his songs " I am invincible as long as am alive" so keep fighting, not in vain we are warriors and survivors.

And who knows. Next time it might be you bringing patience, empowering, encouraging, strengthening and bringing hope to those who think all is lost.
There is hope while you're inhales till have oxygen and as long as your hearts keep beating.

Prayer is a powerful weapon too and don't forget love, love knows no barriers or frontiers or languages or races. Love is universal. Always tell those you love that you do because life is too short.

Thank you so much for inviting me and be part of this amazing blog with the 2 people I love most whom are not only my warrior friends but I believe are the sisters God wanted me to Pair this to bring this blog and hope and awareness in to fruition, Missie and Sarah. I met them on Instagram and today we are as if we came from the same wound and battle this disease together, and because we have each other, no matter what comes our way, we will grow stronger everyday, no matter what Lupus throws at us.

Again, Thank you for reading me and may the Lord above give you lots of years to live a healthy life and continue doing this job that spreads the hope that one day there will be a cure.

I am Jen McCulley-Montes, A Lupus survivor.
I may have Lupus, but Lupus doesn't have me!